I need to double check with Cath if she is taking copies to the HDA AGM but she usually takes a few books from the bookstore. If anyone is attending, and wants to buy a copy there to save on P&P, please let me or the HDA know.

There's a Thread open at the moment about the changes in the Benefit System. As sad as I am that Steve is no longer with me, I'm thankful we had a relatively easy ride when it came to applying for DLA and ICB at the time and we are not going through the claiming process now.

It wasn't all smooth going, and I'm sure my Civil Service background helped me navigate the paperwork a lot easier than some.

I did a couple of poems for the book that covered, to my mind, the unfairness of the processes and how you need to have your wits about you at a time when it's hard enough as it is.

As time went by, my husband needed more and more prescribed drugs; creams; protein drinks etc. We were not on income based benefits and, living in England*, we were told we had to pay for everything. The costs were escalating and although I bought pre-paid certificates it was another cruel expense for something that was no fault of ours.

I was aware some conditions merited instant waiving of charges and I considered it was unfair HD did not automatically come into the frame upon diagnosis; or at least when drugs and prescribed nutritional drinks were needed. I started making enquiries but was told at every turning HD was ďNot on the list of exempt conditionsĒ.

After more investigations, and finally getting sight of the so called ĎList of exemptionsí when discussing the matter with the Department of Health, I found that my husband should not have been paying for his prescription for several years once he had deteriorated and become at risk of danger when leaving the house unaccompanied.

It was true that HD itself was not listed. However, what no GP or anyone else had done was to look beyond the names of illnesses and read the last qualification which states: ĎA continuing physical disability which means you cannot go out without help from another person.í If they had seen it, then all I can say is it was never asked of me if that would apply. The question was given on Form FP92A. In the circumstances, the NHS refunded the costs of my Pre-Paid Certificates but it was another battle I could have done without. HD is unjust enough as it is...

Perhaps we should move to Wales my love,I think it could be wise.We canít afford these spiralling costs,And a different law there applies.

The man next door is able to work,But he gets his meds for free.Itís sad heís diabetic my love,But heís not like you and me.

Weíre stuck in this rut, and cannot work,And we know life wonít get any better,But weíre told again that your illness donít count,According to this doctorís letter.

It CANíT be right; Iím taking it further,And finally weíre getting somewhere.A clause in the Form was missed my love,As nobody spotted it there!

*UK Prescription charges as at 5th April 2011

England: £7.40 per itemWales: No chargeScotland: No chargeNorthern Ireland: No charge

The Benefit Cheat

Introduction

I opted to put ĎThe Prescriptioní in this Section as I felt there was a social injustice issue in it. It occurred to me instead of assisting and wanting to enable those with HD and their families/carers to get financial support, there seemed to be a suspicion that everyone out there was just in it for what they could get. I shall resist the urge to comment on the pros and cons of the current changes in the benefits system as at April 2011.

In our case, the denial aspects of HD meant we did not claim for anything more than Job Seekers Allowance (JSA), or get any real support until actual diagnosis. This was despite it being acutely obvious the illness was taking hold and radically impacting on our finances.

At the time a specialist was seen, and was blood drawn (17th March 2005), my husband was on JSA and had been so since 2003. The poor man had been laid off many jobs, no doubt due to his performance getting worse, yet they did not know there was an underlying cause. He was still convinced someone would employ him until April 2005. I had to sit down with him at the Jobcentre and, with the help of his Advisor who was by now aware of the Huntingtonís explaining his struggles, tell my husband he would never work again. He was then put on Incapacity Benefit and I applied for Disability Living Allowance for him. Just over a year later I applied for Carers Allowance when I had to cease work to look after him full time.

This poem is not about benefit cheats in the sense that society tend to think of... Scroungers; spongers; fraudulent etc. Denial of HD can lead to support being withheld understandably as it has not even been claimed for. Thatís not to say it isnít much needed, it might be that itís a case of those in real need are being cheated of benefits, by reluctance to accept it is time...

The HD now affects his brain;His office getting worried.Relationships begin to strain;His exit now gets hurried.

With wife aware his time is short,And skills get more diminished,She hasnít got the heart to say,His working life is finished.

Their income now is cut in half;They canít afford their pride.He could apply for further help,If HD werenít denied.

The benefits kick in at last,When diagnosis made.No mention though of all funds,The system could have paid.

I'd wait until you read it before describing it as 'great work' if I were you

Seriously though, you will have to excuse the typos and a few corkers of typos in there ( a prize for anyone who comes up with a list of them so that I can save time working on the re-print one day

It makes sad reading in places but such is the nature of the beast. I just hope others can get help from reading about shared experiences. Don't eat whilst reading though as I talk all manner of bodily functions